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HANJournalHANJournal

President’s Message 3 HANJ Social Worker Update 5 HTC Updates 6 Emergency Guidelines for Hemophilia 13 Back to School Basics 28

Summer 2017



Summer 2017

HANJournal

President’s Message 3 Social Services 5 Obamacare in 2015 6 HTC Updates 7 Contributing to HANJ 12 Retirement as a Couple 14 Medical Advisory #417 16

Winter 2015

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Summer 2017

We have had a great few months and some great events at HANJ since our last newsletter. We held our annual testimonial dinner where we had the pleasure to recog-nize Sal Rafanelli – CEO and Co-Founder of BiologicTx for his great work and long history of providing a critical link and service to our com-munity. At the HANJ Annual Meeting, we also had the opportunity to recognize some outstanding individuals that are part of and have supported our com-munity for many years. We had the honor and privilege to give out the following awards; The Benefactors Award to John Halvey, two Special Recognition Awards to Bill Murray and Glenn & Eileen Rosenwald, two Hu-manitarian Awards to Ward Sanders and Dr. Franklin Desposito, The Un-sung Hero Award to Vanessa Cullom, Congressman Dean Gallo Award to James Romano, The Past President’s Award to George Keelty and the Kuhn Award to Dr. Katherine High. On behalf of HANJ, I want to congrat-ulate and thank again all of the indi-viduals we had the opportunity to recognize for your hard work, dedica-tion and commitment to our commu-nity. Each of you could not be more deserving of these awards for all you have done and continue to do. In addition to Dr. Katherine High, President and Chief Scientific Officer of Spark Therapeutics, receiving the Kuhn Award at the Annual Meeting, she also presented on some of the new and exciting research and pro-gress that is being made by Spark

Therapeutics in the field of bleeding disorders; specifically, Hemophilia. We could not be more excited about the investments and research time that all of our industry partners are dedicating to bleeding disorders. In addition to the Testimonial Dinner and Annual Meeting, In April we held our annual Hemophilia Awareness Walk at the RVCC campus where we had the opportunity to spend a great day together as a community. In June, we held our Annual Dennis Keelty Memorial Golf Tournament that brings together HANJ members with our industry partners to provide remembrance of individuals from our community and also raises money to continue to support all of the critical programs HANJ provides. The turnout for all of these events was good, however it could and needs to be better. We understand everyone has a busy schedule and certain dates can conflict with plans, however these events provide many benefits to all of you and your partici-pation, as always, is greatly needed. As a community we are stronger when we ALL work together. I hope the summer is off to a great start for all of you and that you enjoy it. We do look forward to seeing you at some of the next events like Blood Brotherhood, Gourmet Dinner or Ca-sino Night. Please remember, if you would like to attend an event and need assistance, please contact the HANJ office. Thank you again and I hope you enjoy the latest HANJ newsletter. Best Regards, David

Message from the President of HANJ David Lechner

BDRN Brochure

In association with:

Bleeding Disorders Resource Network

BDRN’s Mission is to improve the quality of life for people living with bleeding disorders.

At BDRN we are dedicated to serving and making a difference

in the bleeding disorders community. We take a team approach

to address each set of circumstances. Our commitment to

improving the lives of those living with a bleeding disorder is

what motivates us and is the essence of everything we do.

Hemophilia Association of New Jersey

HANJ’s mission is to improve the quality of life for persons with a bleeding disorder by providing and maintaining access to highly qualified medical treaters and successfully proven medical regimens.

• Ensure access to care• Secure more comprehensive insurance coverage• Ensure the NJ Standards of Care are met• Provide financial grants to hemophilia and bleeding disorder

patients• Provide financial grants in support of the HTC’s• Provide education programs and reimbursement support to

patients of New Jersey

The 340B Program is a federal drug discount program. It entitles certain safety net providers and clinics, including hemophilia treatment centers, to a discounted price for covered outpatient drugs. Rutgers/RWJ has registered to participate in the 340B Program as a Covered Entity. This will allow Rutgers/RWJ to purchase factor and other drugs at a discount. While other grant fundings suffer cutbacks, Rutgers/RWJ is able to use the cost savings and other program revenues to fund the services it provides to its patients. Rutgers has selected BDRN as one of its contract pharmacies under the 340B Program. BDRN and HANJ have agreed to work together to provide certain services for the Rutgers program, including patient education and financial assistance services.

340B Program

HANJournal is published by the Hemophilia Association of NJ 197 Route18 So. Suite 206 North East Brunswick, NJ 08816. Phone: 732-249-6000 Fax: 732-249-7999 E-mail: [email protected] Website: www.hanj.org Letters and submissions are wel-come. The opinions expressed in HANJournal articles are solely those of the authors and do not necessarily reflect the philosophy of the Hemophilia Association of New Jersey. HANJ makes no recommendations for or against treatments and/or therapies. Submissions may be reproduced without permission provided a credit line is given citing the publication name and issue date. Acceptance of advertising for products and services in HANJournal in no way constitutes endorsement by the Hemophilia Association on NJ.

The Hemophilia Association of New Jersey was founded in August 1971 by 10 concerned families, and offers assistance to persons with hemophilia and their families from our office located in East Brunswick, New Jersey. Our mission is to improve the quality of life for persons with a bleeding disorder by providing and maintaining access to highly qualified medical providers and successfully proven medical regimens.

PRESIDENT David Lechner 1st VICE PRESIDENT Joe Markowitz VICE PRESIDENT Ronald Grayzel, Esq. TREASURER Steven Moersdorf SECRETARY Elaine Kelly IMM. PAST PRESIDENT Chris Maniaci MEDICAL ADVISOR Jeff Lynch, M.D. TRUSTEES Teri Doran-Rogers Wyatt Durham George Keelty Richard Keelty Robert Lessner Richard Lloyd Peter Marcano Mary Petti Carl Piercey Mark Scudiery Jerry Seltzer

MANAGING DIRECTOR Elena Bostick EXECUTIVE DIRECTOR Stephanie Lapidow

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Insurance Update After several attempts from the GOP to repeal and replace the Affordable Healthcare Act (ACA), also known as Obamacare, the bill was not passed by the senate due to lack of votes needed to move the bill forward. While Obamacare is still in place, no one can know for sure how long it will remain intact and what will eventually replace Obamacare if the GOP is suc-cessful in repealing and replacing the ACA. It is also uncertain how Obamacare will survive without sup-port from the President since he has vowed to let Obamacare fail. This can be extremely detrimental for families dealing with a chronic illness and par-ticularly with families within the he-mophilia community. HANJ continues to remain vigilant and continues to monitor any changes in the healthcare bill. Insurance plans offered today have not only increased in premium cost, but have also increased in their co-pays, deductibles, and overall out-of-pocket costs. With these significant increases, individuals and families are obligated to pay more for their medi-cal care. This can put a heavy burden and strain on families and individuals who have a chronic health condition. Through our insurance grant pro-gram, HANJ has expanded assistance to include co-pays and other out-of-pocket costs that are no longer cov-ered through insurance. If you are in need of insurance assistance and feel that you may qualify to receive assis-tance through our insurance grant, please do not hesitate to contact

Social Worker Update By Neidy Olarte, MSW Social Service Coordinator

HANJ for information. Leaving your plan and what to know: Were you currently terminated from your health insurance policy? Were you currently on Medicaid and no longer qualify to remain on your Medicaid plan? Did your income ex-ceed the eligibility amount to remain on your health insurance plan through Medicaid? If you recently lost your health insurance, be aware that you have (60) days to enroll on-to a policy through the marketplace, if that is the option you plan to take. Even if you are trying to enroll with our insurance grant program, if you do not secure a health insurance plan within the (60) day window, you will not be allowed to enroll into a plan through the marketplace until open enrollment which is usually after Oc-tober. If you feel that you have been terminated from your insurance com-pany in error, you have a right to ap-peal. Do not assume that you will be accepted to an insurance plan when you are ready to have a plan. If you do not seek insurance within the (60) day window you will not be eligible for insurance unless you feel you may qualify for a special enrollment period. Information on what consists as a special enrollment can be found on the healthcare website at www.healthcare.gov. This does not apply to those who have switched jobs and a new employer is offering insurance. Most employers have you wait (90) days before you are able to enroll under their health insurance plan. If you have any questions re-lated to this matter you can contact HANJ for further assistance.

Rutgers RWJ Medical School 340B Program: In order for the hemophilia program to maintain comprehensive hemo-philia care in an era of increasing health care costs amidst dwindling levels of federal and state funding of hemophilia programs, the Rutgers Robert Wood Johnson Medical School Hemophilia Treatment Center has be-come a 340B covered entity as of Oc-tober 1, 2015. Participation in the federal 340B program makes it possi-ble for our HTC to continue to serve the hemophilia community with the high level of services and quality of care it expects. If you have ques-tions about this program, please do not hesitate to contact the HTC di-rectly at 732-235-6533. Educational & Programming Events: The HTC will be hosting an infusion training program. Date and time to be decided. In addition, please do not hesitate to call the HTC to set up individual infusion training sessions (see contact information below). School Visits: The staff at the HTC continues to provide in-service programs to school personnel about a child’s hemophilia. If you are in need of an in-service program at your child’s school or camp, please contact

Lisa Cohen, MSW at 732-235-6533. Please do not wait to contact Lisa, as the slots for these visits fill up very quickly during this time of year! Ongoing Training: The staff at the HTC continues to provide hands-on training in infusion procedures to parents and their chil-dren. A series of thirty minute ses-sions are held over a period of weeks/months depending on the families’ needs, abilities and sched-ule. Please call Frances Maceren, RN at 732-235-6542, if you are interest-ed in arranging infusion training. General Information: For information regarding women with bleeding disorders and/or a family history of hemophilia, clinical trials, genetic counseling, insurance issues, educational sessions or school visits, please call the Hemo-philia Treatment Center at 732-235-6531.

Rutgers Robert Wood Johnson Medical School

Hemophilia Treatment Center

WHAT’S HAPPENING New Jersey Hemophilia Treatment Centers

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Happy Summer! The staff from the Comprehensive Hemophilia Treat-ment Center at Newark Beth Israel Medical Center and Children’s Hospi-tal of New Jersey would like to share some updates, current programs, and plans with you. NEWS New Staff: We are happy to announce that Kim Roberts, MHA has joined our team as our new Data Analyst. Welcome Kim! UPCOMING Self-Infusion Workshops: The process of learning how to self-infuse can be stressful. Our HTC will be offering self-infusion workshops for patients, and their parents or guardians, to learn how to properly and confidently self-infuse. The workshops, which will take place at the HTC, will enhance knowledge, educate, and empower both patients and their parents or guardians alike. At the end of the workshop, those who attend will be one step closer towards independence. These work-shops have previously been one of our most attended workshops. To sign up for a workshop, please con-tact Erica, our Social Worker, at the HTC. Hemophilia Camp: The time for summer camp is quickly approaching. This year, like last year, we will have several children attending a hemophilia camp at ei-ther Double H Ranch or Hole in the Wall Gang Camp. Hemophilia camp

is an integral part of our patients’ journey towards independence. Learning how to self-infuse at camp is one of the many highlights of our camper’s experience, and both camps have many supportive coun-selors who encourage our patients in that process. Both camps also offer family programming in the spring and fall. For more information about camp, or if your child or family is in-terested in attending camp in the fu-ture, please contact Erica, our Social Worker, at the HTC. Travel Letters: Are you going to be travelling? Are you going to need a travel letter? If you answered yes to either of those questions, this information is for you. Please remember to let the HTC staff know if you are going to need a trav-el letter at least two weeks prior to your scheduled trip so you can rest assured that your letter is in your hand as you embark on your jour-ney. ONGOING PROGRAMS Hemophilia 340B Program: We are excited to announce that our HTC participates in the Federal 340B Program. As a comprehensive care center, we have been improving the quality of life for individuals with bleeding disorders and providing cost effective care in the long term for many years. In an effort to help HTCs sustain themselves, and pro-

Newark Beth Israel Medical Center and

Children’s Hospital of New Jersey

vide better care for their eligible pa-tients, Congress created the 340B Program as part of the Veteran’s Health Care Act of 1992. Across the United States almost all of the HTCs participate in 340B Programs. De-pending on your healthcare cover-age, patients have a variety of phar-macy options to choose from. Our HTC has contracted with four differ-ent home care companies; Accredo, BDRN, Bioscrip, and Option Care. Patients who are not currently using one of these four companies may voluntarily switch, if their insurance company allows. Participation in the 340B Program is voluntary. Please contact our Program Manager Phyllis for further information. My Life Our Future Carrier Testing: The My Life Our Future program has been providing patients with hemo-philia the opportunity to determine the genotype of their hemophilia. The program has now expanded to offer genotyping to potential and known carriers of hemophilia. The carrier testing will be available, for female family members of current participants of My Life Our Future, through the end of 2017. Please contact the HTC for more infor-mation. School Visits: School visits are a wonderful oppor-tunity for our HTC to provide educa-tion and outreach to your child’s school or daycare about hemophilia and other bleeding disorders. Whether the visit is with the staff at your child’s school, the daycare staff, or even the child study team, a school visit opens the lines of com-munication between the child’s school or daycare and the HTC.

If you are going to want a school visit scheduled for the fall for your child’s school or daycare center, please contact the HTC so that a visit can be scheduled. In addition, if you will need any forms or letters for your child’s school or daycare center com-pleted, please be mindful that it may take up to two weeks for forms or letters to be completed. For more information, please contact us at the HTC. Comprehensive Evaluations: It is really important to schedule and attend an annual comprehensive evaluation at the HTC. The annual evaluation is an essential component in the provision of an individual’s comprehensive care. Members of the HTC treatment team will complete medical, musculoskeletal, psychoso-cial and laboratory evaluations to assess the patient’s current health and to develop a treatment plan for the upcoming year. Education and referrals for medical and psychoso-cial services will also be provided as needed. At the time of an annual evaluation, patients will be asked to participate in the ATHN (American Thrombosis & Hemostasis Network) Data Set. This is a voluntary pro-gram conducted by HTC’s with sup-port by ATHN to improve the health of people with coagulation disorders. Patients with hemophilia can also participate in My Life Our Future to determine the genotype of their he-mophilia. Please note that any in-dividual receiving medication through the HTC to treat their bleeding disorder must be seen by the HTC on an annual basis. Manufacturer Factor Program: Manufacturers of clotting factor

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products have programs available to help patients continue to receive fac-tor products during a lapse of insur-ance coverage. They also offer co-pay assistance programs. Each program has enrollment require-ments and many require re-enroll

St. Michael’s Medical Center

ments and many require yearly re-enrollment. Enrollment in these pro-grams can be beneficial. For more information, please contact your home care company or us at the HTC.

Individualized session: Our staff is always available for indi-vidual educational sessions on topics such as infusion and factor products. We always welcome suggestions from our patients. If you need as-sistance, please contact Dominique Joseph, RN at (973) 877-5340.

Educational Event: We are pleased to announce that our center provided educational sessions throughout the months of May and June. Our topics were Nutrition, Ex-ercise, Physical Therapy/ Arthropa-thy, Understanding Hepatitis, VWD, Hemophilia Awareness and Disease Management and Long Acting Fac-tor/Q&A. Patients had the oppor-tunity to voice their opinions, ques-tions and concerns and were appre-ciative of all these sessions. We en-courage our patients to call and give us suggestions on what they would like to hear next. We are always available and open to suggestions. For further information please call The Blood Research Institute and speak with Social Worker Joanne Rodriguez at (973)877-2967.

School Visits: As we all know the school year has already ended but we want everyone to know that our staff is available for school visits with school personnel and nurses. To make arrangements for the next school year please con-tact Social Worker Joanne Rodriguez at (973) 877-2967

Looking Ahead: For those starting or going back to college next year, please contact Jo-anne Rodriguez, Social Worker at (973) 877-2967 for scholarship in-formation and preparation.

Please feel free to contact our treatment center to schedule ap-pointments, education sessions or if you have any other ques-tions, or concerns. We are com-mitted to working together with you to provide individualized care. Our general number is (973) 877-5340. We hope you all have a wonderful and safe SUMMER!!!

Please contact us at the Hemophilia Treatment Center to sign up for one of the above programs or to request further information on available groups or services for children and adults. We can be reached at (973) 926-6511.

ALL Members!

The Hemophilia Association of New Jersey

will be hosting several Pharmaceutical Educational Programs

throughout the year

August 2017 Shire

Topic: Bullying Online and Offline Teen/Adult

Thursday, August 17th

October 2017 Pfizer

Topic: Considerations for the Bleeding Disorder Community: Dealing with

Persistent Pain Thursday, October 12th

December 2017

Pfizer Topic: Getting Real: Being a Teen or

Young Adult (with Hemophilia) Tuesday, December 5th

This information could change. Please check your mail for invitations with meeting dates

and topics as well as RSVP instructions.

Hemophilia Association of New Jersey Invites you to our Fall

Educational Symposium Please join us on Saturday, September 16, 2017 for our Fall Educational Symposium! Registration and brunch will be available at 10:00am and the Symposium will begin at 11:00am.

Date: Saturday, September 16, 2017

Time: 10:00am to 1:00pm

Place: Hilton Newark Penn Station

Gateway Center– Raymond Blvd.

Newark, NJ 07102-5107

(973) 622-5000

Our Presenters will be:

Phoebe Shagan, RN, CCM, a licensed independent Life and Health Insurance Agent. Phoebe will present information about Medicare and why you shouldn’t wait until you are 65 to get the facts.

Katie Verb, Director of Policy and Government Relations for the Hemophilia Federation of America, will present the topic, Staying Covered: Emerging Trends in the Insurance Landscape.

Diane Horbacz, Educator, will offer a hands-on program for children (ages 7-12) called “My Amazing Blood.”

We hope you will be able to join us for this valuable symposium. You may RSVP by calling Cindy Hansen at HANJ at 732-249-6000 or by email to [email protected].

Parking will be paid for by HANJ. Upon registration, please request a paid parking voucher.

Meet the Board…

Jeff Lynch, MD HANJ Medical Advisor I have to admit that I spent most of my life not aware that there was a hemophilia community or a HANJ working on our behalf. As a child I had many unusually severe bruises and joint injuries which baffled our local physician. It wasn't until wisdom teeth extractions at age 16 that I was re- ferred to a facility familiar with bleeding disorders. Finally diagnosed with mild/moderate hemophilia A and this being 1969, I received my first cryoprecipitate infusions while watching Neil Armstrong walk on the moon. For many years

after that I received only intermittent and substandard treatment mostly due to my desire to ignore and deny the disease. Fortunately I made the effort and 10 years ago discovered the Cardeza Foundation HTC in Philadelphia. What a pleasant surprise to find physicians and nurses knowledgeable about hemophilia not to mention the availability of home infusion and adequate treatment. In addition this put me on the HANJ mailing list and started my interest in partici-pating with our community. The Blood Brotherhood activities have given me a look at the varie-ty of experiences we have with the disorder but also what we have in common trying to get by and stay healthy. In my personal life I am a semi-retired Anesthesiologist. I am a graduate of Muhlenberg Col-lege and the UMDNJ New Jersey Medical School. My internship was in Internal Medicine at Mor-ristown Memorial and I served an anesthesia residency at the University of Michigan Medical Center. For 30 years I have been practicing at what is now the Virtua Health System in Voor-hees. I reside in Medford with my wife Linda and our dog Tasha{see photo} . We have two adult children. Dan works for Enterprise in Charlotte NC and Lindsay is a surgical resident at Thomas Jefferson University Hospital in Philadelphia. I am very much looking forward being part of HANJ and its efforts to ensure quality of care and life for our members. The coming years seam to promise great advances in treatment as well as a political struggle to ensure access to these advances. Jeff Lynch

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Emergency Guidelines for Hemophilia By Neidy Olarte, MSW Social Service Coordinator

The Department of Health has released Emergency Guidelines for Hemophilia to all hospitals in the state of New Jersey. These guidelines were revised by the Medical Advisory board of the Hemophilia Association of New Jersey and will be a source to the hospitals particularly the emergency rooms to use when they a treating an individual with hemophilia. Please feel free to carry these guidelines with you should you need to show emergency personnel. If you feel that your nearest emergency room does not have these guidelines, please contact HANJ so that we can assure they have the guidelines available.

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State of New Jersey Department of Health

Cover Letter

Emergency Guidelines for Hemophilia

General Guidelines Page 1

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�This document was updated and approved July 22, 2016 and originally developed in collaboration with Medical Advisory Board of the Hemophilia Association of New Jersey representatives in November 2005 called Emergency Guidelines for Hemophilia: General Guidelines and from various professional organizations including Medical and Scientific Advisory Council (MASAC) of the National Hemophilia Foundation in October 15, 2006 (document #175) for emergency personnel in New Jersey.

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Red Flags in Hemophilia

• All patients are categorized as emergent • Pain is often the first symptom of bleeding • All trauma is significant • Believe the patient or parent that they are having a bleed.• The patient may appear well, yet may be having a significant bleed

1. TREAT HEMOPHILIA PATIENTS IMMEDIATELY.

2. Infuse with Factor BEFORE diagnostic studies, such as radiographs, CAT scans, suturing, or other procedures. For routine joint bleeding, no radiographic studies are indicated.

3. Contact the patient’s Hemophilia Treatment Center or hematologist. However, do not delay treatment while waiting for a response. Most patients carry their factor and know their diagnosis or carry an ID card.

4. For patients with hemophilia who have illnesses or disorders that necessitate an invasive procedure (lumbar puncture, arterial blood gas, arthrocentesis, etc.) or surgery, factor replacement therapy must be administered beforehand.

5. A patient often has pain prior to obvious swelling of a joint. Believe and treat the patient. It is always better to err on the side of treatment rather than withholding factor replacement, since early treatment of joint bleeds can help prevent joint damage.

HEMOPHILIA ASSOCIATION OF NEW JERSEY 197 Route 18 South

Suite 206 North, East Brunswick, NJ 08816 Tel: 732-249-6000 • Fax: 732-249-7999

Web: www.hanj.org Email: [email protected]

��

6. Factor Concentrate must be administered intravenously by IV push over 1-2 minutes.

7. Dose factor up to the "closest vial" and infuse the full content of each reconstituted vial.

8. In situations in which patients are hemodynamically stable and are not requiring volume replacement, the smallest gauge needle should be utilized for obtaining IV access (25g butterfly needles in young infants, 23g butterfly needles in older children and adults).

9. The most experienced IV therapist or phlebotomist should perform any venipuncture. Traumatic venipunctures and repeated needle sticks cause painful hematomas that may limit further IV access.

10. Intramuscular injections should be avoided if at all possible. If they must be given, factor replacement therapy should precede the injection. Tetanus

immunizations may be administered subcutaneously.

11. Tourniquets should not be applied tightly to extremities because they may cause bleeding.

12. Aspirin, NSAIDs and aspirin-containing products are contraindicated in individuals with hemophilia. Acetaminophen and/or codeine may be used for analgesia.

BLEEDS REQUIRING TREATMENT

1. CRITICAL BLEEDS: significant injury to head, neck, face and throat, abdomen, iliopsoas muscle, gastrointestinal bleeding, deep laceration, compartment syndrome, new or unusual headache, severe pain or swelling at any site, acute fracture or dislocations Hemophilia A: Factor VIII 50 units /kg (100 %)Hemophilia B: Factor IX 100 -120 units/kg (100 -120%)von Willebrand Disease: Factor VIII concentrate with von Willebrand factor 50 – 100 units VWF: RCo/kg

Admit the patient

2. SIGNIFICANT BLEEDS: are bleeding into joint and muscles, soft tissue, sprains, lacerations, hematuria, refractory nosebleeds, oral bleeds Hemophilia A: Factor VIII 15 - 50 units /kg (30 -100%)Hemophilia B: Factor IX 30-100 units /kg (30-100%)



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Von Willebrand Disease: a. Type I DDAVP 0.3 mcg/kg IV drip in 25-100 cc of normal saline

(based on total dose of DDAVP) over 30 minutes maximum dose is 20 micrograms If not responsive to DDAVP and or for Type 2 A, 2B, and 3

1. Factor VIII concentrate with von Willebrand factor 50 – 100 units VWF: RCo/kg

Out-patient follow up with hemophilia center should be arranged.

3. Mucosal bleeds, especially the mouth, that spontaneously stop. Usually re-bleed and almost always require treatment with antifibrinolytics agent such as Amicar (amino-caproic acid), 50 mg /kg/dose every 6 hours by mouth to maximum of 12 gm/day, are used in mucosal bleeds to enhance clotting.

RECOMMENDED PRODUCT

The treatment of choice for individuals with Hemophilia A (factor VIII deficiency) or B (factor IX deficiency) is recombinant factor VIII or else the patient’s product of choice. Plasma-derived concentrate is a suitable alternative in an emergency situation when recombinant Factor VIII is not available. Cryoprecipitate and fresh frozen plasma are no longer recommended for treatment of individuals with hemophilia A or B.

Hemophilia A (Factor VIII Deficiency) Factor VIII Concentrates Recombinant

Recombinate

Advate

Helixate FS

Kogenate FS

Xyntha Novoeight® Eloctate (Long Acting VIII)

Monoclonal VIII (Plasma Derived) Hemofil M

Monoclate P

Plasma Derived viral inactivated Alphanate

Koate DVI

Hemophilia B (Factor IX Deficiency) Factor IX Concentrates Recombinant

Alprolix (Long Acting IX) BeneFIX

Rixubus

Monoclonal IXMononine

Plasma derived viral inactivated Alphanine

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FACTOR VIII INHIBITOR Recombinate Factor VIIa NovoSeven

For individuals with inhibitors (antibodies to factor VIII), treatment decisions may be more complicated. The care of inhibitor patients should be urgently discussed with the patient's hematologist. If an individual with an inhibitor presents in a life- or limb-threatening scenario, the safest immediate action is to prescribe recombinant factor VIIa (rFVIIa) NovoSeven at a dose of 90 mcg/kg every 2 hours until bleeding resolves or Activated Prothrombin Complex Concentrates (FEIBA) at 75-100 units/kg.* The patient or family can also provide information on response to therapeutic bypassing agents.

FACTOR IX INHIBITORDo not give factor IX-containing products to patients with a history of factor IX inhibitors and anaphylaxis. Give Recombinate Factor VIIa. NovoSeven

For individuals with inhibitors (antibodies factor IX), treatment decisions may be more complicated. The care of inhibitor patients should be urgently discussed with the patient's hematologist. If an individual with an inhibitor presents in a life- or limb-threatening scenario, the safest immediate action is to prescribe recombinant factor VIIa (rFVIIa) NovoSevenat a dose of 90 mcg/kg. every 2 hours until bleeding resolves. * The patient or family can also provide information on response to therapeutic bypassing agents.

VON WILLEBRAND DISEASE IV DDAVP

STIMATE INTRANASAL SPRAY Factor VIII Concentrate containing VWF

Humate P

Alphanate

Wilate

Koate DVI

Factor V Deficiencies Fresh Frozen Plasma Aminocaproic acid (Amicar)

Factor VII Deficiencies Recombinant factor VIIa (rFVIIa) NovoSeven 15-30 mcg/kg every 4 to 6 hours slow IV push

Factor XI Deficiencies Fresh Frozen Plasma Aminocaproic acid (Amicar)

Hemophilia Association

of New Jersey

37th Annual Testimonial Dinner Dance

Humanitarian “Man of the Year”Honoring

Sal J. Rafanelli, R.P.h.CEO/Co-Founder

BiologicTxSaturday, April 15, 2017

Fiddler’s Elbow Country Club

Hemophilia Association

of New Jersey

37th Annual Testimonial Dinner Dance

Humanitarian “Man of the Year” Honoring

Sal J. Rafanelli, R.P.h. CEO/Co-Founder

BiologicTx Saturday, April 15, 2017

Fiddler’s Elbow Country Club

SHIRE 2 Pg Spread

© 2016 Shire US Inc., Lexington, MA 02421. All rights reserved. 1-800-828-2088.SHIRE and the Shire Logo are registered trademarks of Shire Pharmaceutical Holdings Ireland Limited or its affiliates.Feiba is a registered trademark of Baxalta Incorporated, a wholly owned, indirect subsidiary of Shire plc.S25994 12/16

Important Facts about FEIBA (Anti-Inhibitor Coagulant Complex)

What is FEIBA used for?FEIBA (Anti-Inhibitor Coagulant Complex) is used for people with Hemophilia A or B with Inhibitors to control and prevent bleeding episodes, before surgery, or routinely to prevent or reduce the number of bleeding episodes. It is NOT used to treat bleeding conditions without inhibitors to Factor VIII or Factor IX.

When should I not take FEIBA?You should not take FEIBA if you have had hypersensitivity or an allergic reaction to FEIBA or any of its components, includ-ing factors of the kinin generating system, if you have a condition called Disseminated Intravascular Coagulation, which is small blood clots in various organs throughout the body, or currently have blood clots or are having a heart attack. Make sure to talk to your healthcare provider about your medical history.

What Warnings should I know about FEIBA?FEIBA can cause blood clots, including clots in the lungs, heart attack, or stroke, particularly after high doses of FEIBA or in people with a high risk of blood clots. Patients that have a risk of developing blood clots should discuss the risks and benefits of FEIBA with their healthcare provider since FEIBA may cause blood clots. FEIBA can cause hypersensitivity or allergic reactions and infusions site reactions, and these reactions can be serious. Because FEIBA is made from human plasma, it may carry the risk of transmitting infectious agents, for example, viruses, including Creutzfeldt-Jakob disease (CJD) agent, and the variant CJD agent. Although steps have been taken to minimize the risk of virus transmission, there is still a potential risk of virus transmission.

What should I tell my healthcare provider?Make sure to discuss all health conditions and medications with your healthcare provider. If you are pregnant or are plan-ning to become pregnant, or are a nursing mother, make sure to talk with your healthcare provider for advice on using FEIBA.

What are the side effects of FEIBA?The most frequent side effects of FEIBA are: low red blood cell count, diarrhea, joint pain, hepatitis B surface antibody posi-tivity, nausea, and vomiting. The most serious side effects of FEIBA include: hypersensitivity reactions, including anaphy-laxis, stroke, blood clots in the lungs, and blood clots in the veins. Always immediately talk with your healthcare provider if you think you are experiencing a side effect.

What other medications might interact with FEIBA?The use of other clotting agents with FEIBA is not recommended, for example, tranexamic acid and aminocaproic acid. Be sure to talk with your healthcare provider and pharmacist about all medications and supplements you are taking.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visitwww.fda.gov/medwatch, or call 1-800-FDA-1088

The risk information provided here is not comprehensive. To learn more, talk about FEIBA with your healthcare provider or pharmacist. The FDA-approved product labeling can be found athttp://www.feiba.com/us/forms/feiba_pi.pdf or by calling 1-800-423-2090 and selecting option 5.

Page 20

SHIRE 2pg Spread

Indications for FEIBA [Anti-Inhibitor Coagulant Complex]FEIBA is an Anti-Inhibitor Coagulant Complex indicated for use in hemophilia A and B patients with inhibitors for:• Control and prevention of bleeding episodes• Use around the time of surgery• Routine prophylaxis to prevent or reduce the frequency of bleeding episodes.

FEIBA is not indicated for the treatment of bleeding episodes resulting from coagulation factor deficiencies in the absence of inhibitors to coagulation factor VIII or coagulation factor IX.

Detailed Important Risk Information for FEIBAWARNING: EVENTS INVOLVING CLOTS THAT BLOCK BLOOD VESSELS• Blood clots that block blood vessels and their effects have been reported during

postmarketing surveillance following infusion of FEIBA, particularly following the administration of high doses and/or in patients with a risk of forming blood clots.

• If you experience any of these side effects, call your doctor right away.

You should not use FEIBA if:• You had a previous severe allergic reaction to the product (reactions causing

discomforts that are damaging and life threatening)• You have signs of development of small blood vessel clots throughout the body• You have sudden blood vessel clots or blocked blood vessels, (e.g., heart attack

or stroke)

Events involving blood clots blocking blood vessels can occur with FEIBA, particularly after receiving high doses and/or in patients with risk factors for clotting.Infusion of FEIBA should not exceed a dose of 100 units per kg body weight every 6 hours and daily doses of 200 units per kg of body weight. Maximum injection or infusion rate must not exceed 2 units per kg of body weight per minute.

At first sign or symptom of a sudden blood vessel clot or blocked blood vessel (e.g., chest pain or pressure, shortness of breath, altered consciousness, vision, or speech, limb or abdomen swelling and/or pain), stop FEIBA administration promptly and seek emergency medical treatment.

Allergic-type hypersensitivity reactions, including severe, sometimes fatal allergic reactions that can involve the whole body, can occur following the infusion of FEIBA. Call your doctor or get emergency treatment right away if you get a rash, hives or welts, experience itching, tightness of the throat, vomiting, abdominal pain, chest pain or tightness, difficulty breathing, lightheadedness, dizziness, nausea or fainting.

Because FEIBA is made from human plasma it may carry a risk of transmitting infectious agents, e.g., viruses, the variant Creutzfeldt-Jakob disease (vCJD) agent and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent.

The most frequent side effects observed during the prophylaxis trial were anemia, diarrhea, bleeding into a joint, signs of hepatitis B surface antibodies, nausea, and vomiting.

The serious side effects seen with FEIBA are allergic reactions and clotting events involving blockage of blood vessels, which include stroke, blockage of the main blood vessel to the lung, and deep vein blood clots.

Call your doctor right away about any side effects that bother you during or after you stop taking FEIBA.

Please see next page for Important Facts about FEIBA. To see the Full Prescribing Information, including BOXED WARNING on blood clots, go to www.FEIBA.com.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

© 2016 Shire US Inc., Lexington, MA 02421. All rights reserved. 1-800-828-2088.SHIRE and the Shire Logo are registered trademarks of Shire Pharmaceutical Holdings Ireland Limited or its affiliates.Feiba is a registered trademark of Baxalta Incorporated, a wholly owned, indirect subsidiary of Shire plc.S25994 12/16

References: 1. Pergantou H, Matsinos G, Papadopoulos A, Platokouki H, Aronis S. Comparative study of validity of clinical, X-ray and magnetic resonance imaging scores in evaluation and management of haemophilic arthropathy in children. Haemophilia. May 2006;12(3):241-247. 2. Gringeri A, Ewenstein B, Reininger A. The burden of bleeding in haemophilia: is one bleed too many? Haemophilia. Jul 2014;20(4):459-463. 3. FEIBA Prescribing Information. 4. Antunes SV, Tangada S, Stasyshyn O, et al. Randomized comparison of prophylaxis and on-demand regimens with FEIBA NF in the treatment of haemophilia A and B with inhibitors. Haemophilia. 2014;20(1):65-72.

*Based on the results from the FEIBA PROOF clinical study of 36 hemophilia A and B patients with inhibitors receiving FEIBA for prophylaxis or on-demand treatment for 12 months.4

†Of those patients who achieved zero bleeding events, two-thirds completed 12 months of the study.4

in median ABR with prophylaxis treatment3

REDUCTION

NO BLEEDSoccurred in 18% (3 out of 17) of patients on FEIBA prophylaxis in a clinical study†3

28.7 median ABR withon-demand treatment3,4

629 bleeding episodes occurred during on-demand treatment3,4

7.9 median ABR with prophylaxis treatment3,4

196 bleeding episodes occurred during prophylaxis treatment3,4

FEIBA is the ONLY FDA-approved treatment indicated for use in hemophilia A and B patients with inhibitors for routine prophylaxis.3

Median ABR with prophylaxis vs. on-demand*3

…with FEIBA prophylaxis patients can have more bleed-free days as compared to on-demand treatment.

Every joint bleed has the potential to do permanent damage1,2

LIVE IN THE BLEED-FREE MOMENT

Actual FEIBA patient.

capital costs—and since you have fewer working years ahead of you, it may be harder to get a small business loan. However, with the current low interest rates, money is relatively cheaper, so another option is to open a low-interest line of credit while still employed.

You should consider both public and pri-vate sources of capital, as well. There are a number of public and private or-ganizations that help startups get off the ground, including state and federal agencies and community development organizations. New, innovative forms of raising capital, such as crowdfunding sites that help you find large numbers of small donors, often without giving up any equity stake, can also prove useful—particularly if you’re planning to start a nonprofit enterprise or a venture related to the arts.

Another option is to borrow against your eligible securities, if appropriate for you, or if you are at least 59 ½ years old, you may want to consider tapping IRA funds. You should consider all the pros and cons associated with these options, be-fore you make a decision to employ ei-ther of them. Keep in mind that your startup budget should not depend en-tirely on funds you’ve set aside for nec-essary expenses in retirement.

Location, location, location The best place to retire may not be the best place for your new business. If working in retirement is a priority for you, remember that location will have a major impact on expenses and quality of life.

People’s view of work and retirement has shifted greatly. While retirement was once synonymous with the end of working, nearly half (47%) of today’s retirees say they either have worked or plan to work during their retirement. 1

But an even greater percentage (72%) of pre-retirees age 50+ say they want to keep working after they retire, and in the near future it will become increas-ingly unusual for retirees not to work.² The decision to continue to work can affect your assets and requires careful strategies to manage your income while working in later years. Preparing in ad-vance for a second-act career is essen-tial. New careers mean new costs New careers may come with new startup costs. Ideally, it’s best to pre-pare for those costs while you’re in your first employment act and outlining your financial needs during your retirement years. One of those costs may be additional training or education. Taking classes or training as soon as possible might give you a better sense of whether you actu-ally want to spend the next few years doing what you had in mind, and whether it’s a viable option in today’s economy. If you plan to start a business, such as opening a store, you may also have

A Working Retirement By Bill Hunter, Director of Personal Retirement Solutions for Bank of America Merrill Lynch

¹Work and Retirement – a Merrill Lynch retirement study in partnership with Age Wave, March 2014. ²Work and Retirement – a Merrill Lynch retirement study in partnership with Age Wave, March 2014.

Page 23

Many popular retirement locales are her-alded for having no state income tax, but they generally have higher sales and property taxes and may have municipal taxes to consider, as well. If your local taxes are high but you want to stay in the same area, consider moving to the next town or just across the state bor-der. Delay Social Security for better benefits One of the possible advantages to a new job is that it may enable you to delay taking Social Security, which has re-wards. More than 80 percent of Ameri-cans select to take Social Security as soon as they become eligible at age 62.³ If your new paycheck allows you to, con-sider delaying taking Social Security. Postponing Social Security payments can boost your available retirement income when you do need it. Every year you de-lay, your total benefits could increase as much as 8 percent per year until age 70, when you earn the maximum. Don’t underestimate insurance costs Health care expenses are people’s top financial concern in retirement however, less than one out of six pre-retirees (15%) has ever attempted to estimate how much money they might need for health care and long-term care in retire-ment.⁴ If you are retiring before you are eligible for Medicare, health insurance costs can be a significant expense, as costs in-crease with age and health status chang-es. If you retire from your primary career before 65 to work independently, COBRA coverage may be available through your current employer’s health plan. This may allow you to purchase as much as 18 months’ worth potentially at a lower pre-mium than what you’d pay on the open market.

If you plan to work elsewhere, negotiate health care compensation as part of your employment deal. If you plan to consult with the company in which you had worked full-time, discuss whether your current health care benefits can carry over into part-time compensation. Make sure you assess any other insur-ance needs, such as disability or long-term care and budget for them. Live your dream, but with eyes wide open The key is to make sure you go into your second act with your eyes wide open. That means looking at how the various aspects of your proposed plan affect one another. Your financial advisor can help you run through the various life scenarios that may affect your plan and create a strategy that makes sense for your situa-tion. View every decision as part of another decision, and consider sitting down with a financial professional to plan out how they all tie together. For more information, contact Merrill Lynch Financial Advisor, Cono T. Spinelli, of the Paramus, New Jersey office at 201.967.2730 or [email protected]. This material should be regarded as gen-eral or educational information on healthcare/Social Security considerations and is not intended to provide specific healthcare /Social Security advice. If you have questions regarding your particular situation, please contact your legal or tax advisor. The investments or strategies presented do not take into account the investment objectives or financial needs of particular investors. It is important that you

³Health and Retirement – a Merrill Lynch retirement study in partnership with Age Wave, May 2014. ⁴Health and Retirement – a Merrill Lynch retirement study in partnership with Age Wave, May 2014.

consider this information in the context of your personal risk tolerance and invest-ment goals. Always consult with your independent at-torney, tax advisor, investment manager, and insurance agent for final recommen-dations and before changing or imple-menting any financial, tax, or estate plan-ning strategy. All guarantees and benefits of an insur-ance policy are backed by the claims-paying ability of the issuing insurance company. They are not backed by Merrill Lynch or its affiliates, nor do Merrill Lynch or its affiliates make any representations or guarantees regarding the claims-paying ability if the issuing insurance company. Bank of America Merrill Lynch is a market-ing name for the Retirement Services business of Bank of America Corporation (“BofA Corp.”). Banking activities may be performed by wholly owned banking affili-ates of BofA Corp., including Bank of America, N.A., member FDIC. Brokerage services may be performed by wholly

owned brokerage affiliates of BofA Corp., including Merrill Lynch, Pierce, Fenner & Smith Incorporated (“MLPF&S”), a regis-tered broker-dealer and member SIPC. Long-term care insurance coverage con-tains benefits, exclusions, limitations, eli-gibility requirements and specific terms and conditions under which the insurance coverage may be continued in force or discontinued. Not all insurance policies and types of coverage may be available in your state. Merrill Lynch makes available products and services offered by Merrill Lynch, Pierce, Fenner & Smith Incorporated (“MLPF&S”), a registered broker-dealer and member SIPC, and other subsidiaries of Bank of America Corporation (“BofA Corp.”). Merrill Lynch Life Agency Inc. (“MLLA”) is a licensed insurance agency and a wholly owned subsidiary of BofA Corp. Investment products offered through MLPF&S and insurance and annuity prod-ucts offered through MLLA:

©2017 Bank of America Corporation. All rights reserved. AR9KM6LS

Are Not FDIC Insured Are Not Bank Guaranteed May Lose Value

Are Not Deposits Are Not Insured By Any Federal Government Agency

Are Not a Condition to Any Banking Service or Activity

Blood Brotherhood For Adult Men with Hemophilia

Page 25

The NJ Blood Brotherhood program holds free events for men with bleeding disorders. This group is open to anyone over the age of 21 who has a bleeding disorder. Each of our events incorporates a bit of education, socializing and a physical activity, but we typically use the time to get to know other guys in the community. The events are completely free and there is no commitment to attend every event. If you’d like to join the Blood Brotherhood group and attend one of our events, please reach out to Joe Markowitz ([email protected], 201-650-0335) or Peter Marcano ([email protected], 201-401-7080) or HANJ directly.

HANJ has partnered with the Hemophilia Federation of America (HFA) to offer the Blood Brotherhood program. Blood Brotherhood is a men’s group open to adult men (21+) with bleeding disorders. The purpose of this group is to provide an opportunity for older men with bleeding disorders to connect with their peers in a fun, relaxed setting. There is NO COST to attend any Blood Brotherhood event and once you sign up, there is no obligation to attend every event. Additionally, transportation assistance (gas cards or pre-paid Visa cards) may be available for each event, depending on our budget.

Ad Half page Bioverativ

• Striving for progress when and where peopleneed it most

• Advancing innovative programs to addressserious unmet needs

• Challenging the status quo at every step with focus,urgency, and integrity

• Carrying on Biogen’s hemophilia treatments with acontinued focus on quality, safety, manufacturing,and product accessibility

HEM-US-1581 04/17 © 2017 Bioverativ. All rights reserved.

Bioverativ is committed to making a meaningful impact in the livesof people with hemophilia and other rare blood disorders by:













Hemophilia Association of New Jersey Annual Meeting & Educational Forum

May 25th, 2017

Katherine A. High, M.D. Co-Founder, President & Chief Scientific Officer, Spark Therapeutics Topic: Gene Therapy: The Future of Hemophilia

Our Guest Speaker:

Honorees

Benefactors Award John K. Halvey General Counsel Bridgewater Associates, LP

Special Award William P. Murray Executive Vice President/National Director MWWPR

Special Award Glenn & Eileen Rosenwald

Humanitarian Award Wardell Sanders, Esq. President New Jersey Association of Health Plans

Humanitarian Award Dr. Franklin Desposito Saint Michael’s Medical Center

Unsung Hero Award Vanessa Cullom Senior Director with the Strategy Team CareCentrix

Congressman Dean A. Gallo Memorial Award

James Romano Director of Government Relations & Advocacy for Patient Services Inc., (PSI)

Past President’s Award George Keelty

Dr. L. Michael Kuhn Memorial Award

Katherine A. High, M.D. Co-Founder, President & Chief Scientific Officer, Spark Therapeutics

Page 27

New Scholarships

Paul D. Amitrani Graduate Scholarship

Daniel Guerriero was awarded the Paul D. Amitrani Graduate Scholarship in memory of former HANJ Presi-dent and honored member of our community for many years. Daniel will be attending NYU to pursue a Mas-ter’s Degree in Public Health. Daniel is a graduate of The University of South Carolina and his volunteering has taken him to Thailand and currently to Peru and the Dominican Republic with LIG Global Foundation, which delivers reliable, excellent medical care to peo-ple who have little or no access to it. Daniel’s ultimate goal is to “manage a non-profit organization aimed at providing healthcare for people in remote areas of the world.”

HANJ Julie E. Frenkel Memorial Scholarship

Benjamin Cutler was awarded the HANJ Julie E. Frenkel Memorial Scholarship, which honors the memory of our beloved Hemophilia Association of New Jersey Assis-tant Executive Director who was fervent in her belief that continuing education is crucial for our community. Ben wil be attending The College of New Jersey and will be studying Economics and Finance.

Robert & Dennis Kelly Memorial Scholarship

Thomas Culp was awarded the Robert and Dennis Kelly Memorial Scholarship in memory of Robert and Dennis Kelly, beloved sons of longtime HANJ Board members Elaine and Robert. Thomas is a Sophomore at Rutgers University and is pursuing a degree of Food Science at the School of Environmental and Biological Sciences.

Hemophilia Association of New Jersey Annual Meeting & Educational Forum

Exhibitors

May 25th, 2017

__________________________________________________

Accredo Specialty Pharmacy Aptevo Therapeutics

BDRN, LLC Bioverativ BiologicTX

BioScrip Infusion Services CSL Behring

Kedrion Biopharma Novo Nordisk Octapharma Pfizer Inc.

Shire

Back-to-School Basics Preparing your child for the school year By Leslie Quander Wooldridge|08.04.2015 Originally Published August 2015 HEMAWARE, NHF

Follow these back-to-school suggestions for your child with a bleeding disorder: Maintain perspective. Remember that school provides opportunities. “A child with a bleeding disorder should attend school every day like every other child,” says Nan-cy G. Hatcher, LCSW, a clinical social work-er at the Hemophilia and Thrombosis Treat-ment Center at -Valley Children’s Hospital in Madera, California. Kids should participate in the classroom, and in physical education, field trips and other activities that promote peer relationships. “Children shouldn’t worry about feeling different,” she adds.

Page 29

Talk with staff, and know your rights. When you register your child at school, note that he or she has a bleeding disorder, says Laurel J. Pennick, MSSW, LCSW, a licensed social worker at the Arizona Hemophilia and Thrombosis Center at the University of Ari-zona Health Sciences Center in Tucson. Schedule a meeting with your child’s teach-ers, school nurse or health aide, principal, physical education instructor and others, as needed. Talk about the basics of your child’s bleeding disorder and how to recognize the signs of a bleed (e.g., limping, favoring one arm or swelling), and when to call you. Dis-cuss first aid for simple bleeds, especially rest, ice, compression and elevation, or “RICE." And determine the need for extra time for tests or a set of books at home. Prepare for sick days and emergencies. School staff should call you if they see signs of a bleed, bruise or other problem. “The main thing that usually happens at school is nosebleeds,” says Pennick. For a serious is-sue, such as a head injury or a head, neck or large muscle bleed, staff should call you and 911, advises Hatcher. If you have preferences about how or when to be contacted, advise the school. Also tell school staff in advance which hospitals have bleeding disorder medications so they know in case of emergency, says Pennick. Develop a plan for absences. “We don’t want children to fall behind,” Pennick says. “It can affect them emotionally.” Find out if your school will send classroom work home or have it available online, so your child can review it at home.

Establish a routine. Budget time for prophylaxis, or “prophy.” “We suggest that you infuse in the morning, ideally before your child goes to school,” says Pennick. That’s because factor is at its highest effica-cy during the active portion of the day. You may need an extra 30 to 45 minutes in the morning, so factor this time commitment in, whether you drive your child to school or send him or her on the bus. At the end of the day, allow time for home-work and relaxation. Ensure your child gets enough sleep. Children 6 to 13 years old typically need 9 to 11 hours per night, ac-cording to the National Sleep Foundation. Try to stick with a consistent bedtime every night of the week. Learn to let go. Allow your child to try new classes and new pursuits. Encourage new friendships. Be open to safe activities and sports. “If a child has severe hemophilia and is on a reg-ular prophy dose schedule, his or her clot-ting factor levels should be high enough that he or she can participate in all but the most aggressive activities,” says Hatcher. Although soccer can be too physical as kids get older, some kids successfully play tennis and even team sports like volleyball. Just check with your HTC about any recom-mended restrictions. That way you and your child will have a good school year.

Your Hemophilia Treatment Center can do School Visits!

Aptevo Ad 2nd page

IXINITY® [coagulation factor IX (recombinant)]

Brief Summary for the PatientSee package insert for full Prescribing Information. This product’s label may have been updated. For further product information and current package insert, please visitwww.IXINITY.com.Please read this Patient Information carefully before using IXINITY. This brief summary does not take the place of talking with your healthcare provider, and it does not include all of the important information about IXINITY.

What is IXINITY?IXINITY is a medicine used to replace clotting factor (factor IX) that is missing in people with hemophilia B. Hemophilia B is also called congenital factor IX de� ciency or Christmas disease. Hemophilia B is an inherited bleeding disorder that prevents clotting. Your healthcare provider may give you IXINITY when you have surgery.IXINITY is not indicated for induction of immune tolerance in patients with hemophilia B.

Who should not use IXINITY?You should not use IXINITY if you:• Are allergic to hamsters• Are allergic to any ingredients in IXINITYTell your healthcare provider if you are pregnant or breastfeeding because IXINITY may not be right for you.

What should I tell my healthcare provider before using IXINITY?You should tell your healthcare provider if you:• Have or have had any medical problems• Take any medicines, including prescription and non-prescription medicines, such as over-

the-counter medicines, supplements, or herbal remedies • Have any allergies, including allergies to hamsters • Are breastfeeding. It is not known if IXINITY passes into your milk and if it can harm your baby• Are pregnant or planning to become pregnant. It is not known if IXINITY may harm your baby• Have been told that you have inhibitors to factor IX (because IXINITY may not work for you)

How should I infuse IXINITY?IXINITY is given directly into the bloodstream. IXINITY should be administered as ordered by your healthcare provider. You should be trained on how to do infusions by your healthcare provider or hemophilia treatment center. Many people with hemophilia B learn to infuse their IXINITY by themselves or with the help of a family member.See the step-by-step instructions for infusing in the complete patient labeling.Your healthcare provider will tell you how much IXINITY to use based on your weight, the severity of your hemophilia B, and where you are bleeding. You may have to have blood tests done after getting IXINITY to be sure that your blood level of factor IX is high enough to stop the bleeding. Call your healthcare provider right away if your bleeding does not stop after taking IXINITY.

What are the possible side e� ects of IXINITY?Allergic reactions may occur with IXINITY. Call your healthcare provider or get emergency treatment right away if you have any of the following symptoms:• Rash• Hives• Itching• Tightness of the throat• Chest pain or tightness• Di� culty breathing

• Lightheadedness• Dizziness• Nausea • FaintingTell your healthcare provider about any side e� ect that bothers you or does not go away.The most common side e� ect of IXINITY in clinical trials was headache.These are not all of the possible side e� ects of IXINITY. You can ask your healthcare provider for information that is written for healthcare professionals.Call your healthcare provider for medical advice about side e� ects. You may report side e� ects to the FDA at 1-800-FDA-1088.

How should I store IXINITY?250 IU strength only; store at 2 to 8°C (36 to 46°F). Do not freeze.500, 1000, 1500, 2000 and 3000 IU strengths; store at 2 to 25°C (36 to 77°F). Do not freeze.Do not use IXINITY after the expiration date printed on the label. Throw away any unusedIXINITY and diluents after it reaches this date.Reconstituted product (after mixing dry product with Sterile Water for Injection) must be used within 3 hours and cannot be stored or refrigerated. Discard any IXINITY left in the vial at the end of your infusion. After reconstitution of the lyophilized powder, all dosage strengths should yield a clear, colorless solution without visible particles. Discard if visible particulate matter or discoloration is observed.

What else should I know about IXINITY?Your body may form inhibitors to factor IX. An inhibitor is part of the body’s immune system. If you form inhibitors, it may stop IXINITY from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests to check for the development of inhibitors to factor IX. Consult your doctor promptly if bleeding is not controlled with IXINITY as expected. Medicines are sometimes prescribed for purposes other than those listed here. Do not use IXINITY for a condition for which it is not prescribed. Do not share IXINITY with other people, even if they have the same symptoms as you. Always check the actual dosage strength printed on the label to make sure you are using the strength prescribed by your healthcare provider.

Manufactured by:Aptevo BioTherapeutics LLCBerwyn PA, 19312U.S. License No. 2054

Part No: 1000973_1CM-FIX-0078

Page 30

Aptevo Ad 1st page

© 2017 Aptevo BioTherapeutics LLC.

All rights reserved. CM-FIX-0136

What is IXINITY®?

IXINITY [coagulation factor IX (recombinant)] is a medicine used to replace clotting factor (factor IX) that is missing in adults and children at least 12 years of age with hemophilia B. Hemophilia B is also called congenital factor IX defi ciency or Christmas disease. Hemophilia B is an inherited bleeding disorder that prevents clotting. Your healthcare provider may give you IXINITY to control and prevent bleeding episodes or when you have surgery.

IXINITY is not indicated for induction of immune tolerance in patients with hemophilia B.

IMPORTANT SAFETY INFORMATION for IXINITY®

• You should not use IXINITY if you are allergic to hamsters or any ingredients in IXINITY.

• You should tell your healthcare provider if you have or have had medical problems, take any medicines, including prescription and non-prescription medicines, such as over-the-counter medicines, supplements, or herbal remedies, have any allergies, including allergies to hamsters, are nursing, are pregnant or planning to become pregnant, or have been told that you have inhibitors to factor IX.

• You can experience an allergic reaction to IXINITY. Contact your healthcare provider or get emergency treatment right away if you develop a rash or hives, itching, tightness of the throat, chest pain, or tightness, diffi culty breathing, lightheadedness, dizziness, nausea, or fainting.

Aptevo BioTherapeutics LLC, Berwyn, PA 19312

IXINITY® [coagulation factor IX (recombinant)] and any and all Aptevo BioTherapeutics LLC brand, product, service and feature names, logos, and slogans are trademarks or registered trademarks of Aptevo BioTherapeutics LLC in the United States and/or other countries.

INDICATIONS AND IMPORTANT SAFETY INFORMATION

• Your body may form inhibitors to IXINITY. An inhibitor is part of the body’s defense system. If you develop inhibitors, it may prevent IXINITY from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for development of inhibitors to IXINITY.

• If you have risk factors for developing blood clots, the use of IXINITY may increase the risk of abnormal blood clots.

• Call your healthcare provider right away about any side effects that bother you or do not go away, or if your bleeding does not stop after taking IXINITY.

• The most common side effect that was reported with IXINITY during clinical trials was headache.

• These are not all the side effects possible with IXINITY. You can ask your healthcare provider for information that is written for healthcare professionals.

You are encouraged to report side effects of prescription drugs to the Food and Drug Administration. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Please see accompanying brief summary of Prescribing Information on next page.

This information is based on Heidi’s experience. Different patients may have different results. Talk to your doctor about whether IXINITY® may be right for you.

Just BIndependent

Since switching to IXINITY, I feel much more

independent, like I’m in control of my own life now.

—Heidi has hemophilia B and uses IXINITY

Since switching to IXINITY, I feel much more Since switching to IXINITY, I feel much more

independent, like I’m in control of my own life now.independent, like I’m in control of my own life now.

See why Heidi switched to IXINITY at JustBIXperiences.com

CSL Ad

AFSTYLA®, Antihemophilic Factor (Recombinant), Single ChainFor Intravenous Injection, Powder and Solvent for InjectionInitial U.S. Approval: 2016

BRIEF SUMMARY OF PRESCRIBING INFORMATIONThese highlights do not include all the information needed to use AFSTYLA safely and effectively. Please see full prescribing information for AFSTYLA, which has a section with information directed specifically to patients.

What is the most important information I need to know about AFSTYLA?

• Your healthcare provider or hemophilia treatment center will instruct you on how to do an infusion on your own.

• Carefully follow your healthcare provider’s instructions regarding the dose and schedule for infusing this medicine.

What is AFSTYLA?

• AFSTYLA is a medicine used to replace clotting Factor VIII that is missing in patients with hemophilia A.

• Hemophilia A is an inherited bleeding disorder that prevents blood from clotting normally.

• Does not contain human plasma derived proteins or albumin.• Your healthcare provider may give you this medicine when you have surgery.• Is used to treat and control bleeding in all patients with hemophilia A.• Can reduce the number of bleeding episodes when used regularly (prophylaxis) and

reduce the risk of joint damage due to bleeding.• Is not used to treat von Willebrand disease.

Who should not use AFSTYLA?

You should not use AFSTYLA if you:• Have had a life-threatening allergic reaction to it in the past.• Are allergic to its ingredients or to hamster proteins.

Tell your healthcare provider if you are pregnant or breastfeeding because AFSTYLA may not be right for you.

What should I tell my healthcare provider before using AFSTYLA?

Tell your healthcare provider if you:• Have or have had any medical problems.• Take any medicines, including prescription and non-prescription medicines, such as

over-the-counter medicines, supplements or herbal remedies.• Have any allergies, including allergies to hamster proteins.• Have been told you have inhibitors to Factor VIII (because this medicine may not

work for you).

How should I use AFSTYLA?

• Administer directly into the bloodstream.• Use as ordered by your healthcare provider.• You should be trained on how to do intravenous injections by your healthcare provider

or hemophilia treatment center. Once trained, many patients with hemophilia A are able to inject this medicine by themselves or with the help of a family member.

• Your healthcare provider will tell you how much to use based on your weight, the severity of your hemophilia A, and where you are bleeding.

• You may need to have blood tests done after getting to be sure that your blood level of Factor VIII is high enough to clot your blood.

• Call your healthcare provider right away if your bleeding does not stop after taking this medicine.

What are the possible side effects of AFSTYLA?

• Allergic reactions may occur. Immediately stop treatment and call your healthcare provider right away if you get a rash or hives, itching, tightness of the chest or throat, difficulty breathing, light-headedness, dizziness, nausea, or decrease in blood pressure.

• Your body may form inhibitors to Factor VIII. An inhibitor is a part of the body’s defense system. If you form inhibitors, it may stop this medicine from working properly. Your healthcare provider may need to test your blood for inhibitors from time to time.

• Common side effects are dizziness and allergic reactions.• These are not the only side effects possible. Tell your healthcare provider about any

side effect that bothers you or does not go away.

What else should I know about AFSTYLA?

• Medicines are sometimes prescribed for purposes other than those listed here. Do not use this medicine for a condition for which it is not prescribed. Do not share with other people, even if they have the same symptoms that you have.

Please see full prescribing information, including full FDA-approved patient labeling. For more information, visit www. AFSTYLA.com

Manufactured by:CSL Behring GmbH35041 Marburg, Germany

for:CSL Behring Recombinant Facility AGBern 22, Switzerland 3000US License No. 2009

Distributed by:CSL Behring LLCKankakee, IL 60901 USA

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CSL Ad

AFSTYLA is manufactured by CSL Behring GmbH and distributed by CSL Behring LLC. AFSTYLA® is a registered trademark of CSL Behring Recombinant Facility AG. Biotherapies for Life® is a registered trademark of CSL Behring LLC.

©2016 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA www.CSLBehring-us.com www.AFSTYLA.com AFS16-05-0084 5/2016

Please see the following brief summary of full prescribing information on the adjacent page, and the full prescribing information, including patient product information, at AFSTYLA.com.

AFSTYLA is used to treat and control bleeding episodes in people with hemophilia A. Used regularly (prophylaxis), AFSTYLA can reduce the number of bleeding episodes and the risk of joint damage due to bleeding. Your doctor might also give you AFSTYLA before surgical procedures.AFSTYLA is administered by intravenous injection into the bloodstream, and can be self-administered or administered by a caregiver. Your healthcare provider or hemophilia treatment center will instruct you on how to do an infusion. Carefully follow prescriber instructions regarding dose and infusion schedule, which are based on your weight and the severity of your condition.Do not use AFSTYLA if you know you are allergic to any of its ingredients, or to hamster proteins. Tell your healthcare provider if you previously had an allergic reaction to any product containing Factor VIII (FVIII), or have been told you have inhibitors to FVIII, as AFSTYLA might not work for you. Inform your healthcare provider of all medical conditions and problems you have, as well as all medications you are taking.Immediately stop treatment and contact your healthcare provider if you see signs of an allergic reaction, including a rash or hives, itching, tightness of chest or throat, difficulty breathing, lightheadedness, dizziness, nausea, or a decrease in blood pressure.Your body can make antibodies, called inhibitors, against FVIII, which could stop AFSTYLA from working properly. You might need to be tested for inhibitors from time to time. Contact your healthcare provider if bleeding does not stop after taking AFSTYLA.In clinical trials, dizziness and allergic reactions were the most common side effects. However, these are not the only side effects possible. Tell your healthcare provider about any side effect that bothers you or does not go away.You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch,or call 1-800-FDA-1088.

For adults and children with hemophilia A

FDA-approved for dosing 2 or 3 times

a week

In clinical trials, whether dosed

2 or 3 times a week

Identical to natural Factor VIII

once activated

Zero inhibitors observed—Low incidence of side effects in clinical trials

In clinical trials, dizziness and allergic reactions were the most common side effects.

*Annualized spontaneous bleeding rate in clinical trials (interquartile range [IQR]=0–2.4 for patients ≥12 years; 0–2.2 for patients <12 years).

Hemophilia Association of

New Jersey

Upcoming Events

HANJ Fall Educational Symposium Hilton Newark Penn Station

Saturday, September 16, 2017

Gourmet Dinner Il Tulipano

Cedar Grove, NJ Monday, September 18, 2017

Kelly Brothers Annual Scholarship Benefit

Saturday, September 23, 2017

Casino Night Pines Manor Edison, NJ

Saturday, October 14, 2017

PACT Workshop December 2017

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Bayer Ad

25 years Kelly Brothers Scholarship Benefit

In Memory of Bob & Dennis

Saturday, September 23, 2017 2—6 PM

Friendly Sons of the Shillelagh 15 Oak Street Old Bridge, NJ

$25 per Adult (Children free)

Includes: Food, Keg Beer, Wine, Soda, Water

DJ & Games for Kids

If unable to attend, donations greatly appreciated. Checks can be made out to:

Hemophilia Association of New Jersey

Any questions please call 732-679-1922

Or H.A.N.J.

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